Tuesday, August 30, 2016

My heart hurts

This morning:

I sit here at the computer and I don't know what to type. I don't know where to start. I don't know how to feel. The outpouring of love, support and prayers is humbling ... and I love it. It helps me so much. Can a large enough collective consciousness truly impact the energy of the universe? I truly hope so.

Camden and Haley are chasing each other around the house. Cam is going to have so much fun once Nicholas is old enough to play with him. Haley is a great playmate in the interim. Somewhat of a young child herself still - she loves it. I have honestly had to separate the two of them because they get so wild. It's quite the comedy sometimes in this house. And now the moment is finally happening - that I've been picturing since we've moved into this house. Uncle Nic has Camden out on the swing we just put in on the giant, centenarian oak tree in the front yard ... the house is quiet ... Nicholas is napping ... and from my desk I can see them playing ... swinging. When I chose the placement of my desk in my formal-dining-room-turned-2nd-office it was for moments like these. I wanted to be able to sit here ... while working ... and see my children play in this majestic tree and it's wonderful front yard (because yes, the yard belongs to that tree). And seeing this, on this day in particular ... it chokes me up ... and I shed tears of joy ... and terror.

Imagine you're laying down on a table, face up. To the left and the right sides of your head and neck is the bottom of two posts, one on each side. Following those posts up to their end point, there exists a bar that extends between the two of them. Attached to that bar is an incredibly sharp, incredibly daunting, terrifying, menacing blade that's just gleaming. It's sharp. It's lethal ... and just looking at it from a distance - all your senses fire off for you to stay away ... only you aren't looking at it from a distance - you're looking up at it ... because you're lying underneath it, face up. Now imagine you can't get up. Imagine this is how you now must exist for the rest of your life as far as you know. This is where people come to visit you, this is where you eat your food, this is where you sleep. This is where you interact with your children, and husband, and family. This is where you live. How the blade is held up - you don't know. How and when the blade goes up ... or down - you don't know. You just know that it can and it does. Now ... try to imagine feeling comfortable on this table. Try to imagine laughing, loving, joking ... try to imagine watching TV ... try to imagine you actually forget where you're lying ... that it doesn't even cross your mind for a few hours ... that sometimes you don't even see the blade. It becomes part of the background of your view - something that's just always there ... hidden sometimes in plain sight. Try to imagine making peace with existing ... with living ... staring face up underneath the blade of a guillotine. This is what it feels like to have this diagnosis.

I often tell Mike that sometimes I feel like I have the easier role in this. That as my husband - as my family, children, friends - those that have to standby and WATCH this process ... helpless to do anything but keep me company, live with me on this table, cheer me on, comfort me ... pray with me - that they have the harder role to play. To be forced to standby and watch ... and wait ... and just see what happens ... to be kept in suspense ... always waiting for the blade to go up and STAY UP ... all the while trying to figure out what you can do ... anything ... searching for any shred of impactful, actionable information ... all the while offering words of comfort and love ... and hope. The periphery - the sidelines - the bystanders ... my husband, my children, my mother, my sister, my family, my friends - you all have the harder role to play.

Today at 1:30 I'll have a lumbar puncture a.k.a. a spinal tap. During this procedure they'll extract a sample of my cerebral spinal fluid. They'll send it off for testing to determine it's make up ... and if it contains any cancerous cells. The brain MRI yesterday was re-read by a neuro oncologist by the name of Dr. Morris D. Groves. Evidently Dr. Groves wrote the book (perhaps A book) on treating cancer in the cerebral spinal fluid. Hooray for me for being extremely fortunate enough to have a doctor who is seemingly THE guy to have on my team in a situation like this. Seriously. HOORAY.

However - what is hard about having this guy on my team is that it's hard to question his opinion and experience. He read my images with Mike and I hovering over his shoulder. The lesions that were treated with cyberknife look better. He would call the scan "stable to improved" from that treatment. Yes! This is good news. For the questionable leptomeningeal mets ... he agrees ... it's questionable. There are a few areas that are concerning and hard to discern. He did say that there is nothing on the scan that is a "slam dunk" positive for LMD (leptomeningeal disease). This is also a good thing. It is also a good thing that this - if anything - was found in interval scanning, not because I had symptoms - which is another good thing - I am asymptomatic (showing no symptoms). All good things that I am seriously thankful for. But when I asked his opinion, based on what he sees and his experience, what does he assume will be the verdict of the puncture? He said his "hunch" is that it would come back positive for disease.

Tonight:

I had the puncture this afternoon with Mike holding my hand, trying not to pass out himself from the stress and anxiety of it all - situation and procedure alike. It was really hard for me to sign the consent form for the procedure today. It felt like stepping off of a cliff. I don't know why this area specifically just terrifies the shit out of me - but it does. But I have always been the one who likes to have more information than not - but something about the possibility of this test returning positive - something about it is just scary. It's my spinal cord - my brain - my spinal fluid. It's delicate.  But I went through it regardless. I want the information - no matter how hard.

They warned me about the potential for a headache after the procedure. It was at the tail end of the procedure before they were finished that I started to feel the headache set in. I mentioned it. They quickly finished. Picture if you can your brain floating inside your head in your spinal fluid. It's filled to the top with fluid and your brain sits in there nicely, cushioned from the fluid. As they remove some of that fluid, your brain kinda sags ... kinda drops down a bit ... because now it's not floating in the same amount of fluid as it was before. That changing ... that sagging ... is what causes the headache. I felt really spacey afterward. I came home and took a nap for a while. Laying down helps the headaches ... it re-distributes the fluid. As it was coming out - the nurse said it looked great ... like rainwater. She said it had the right viscosity, the right flow - she said it looked great. She showed me. It looked like water. Results will most likely be in at the end of this week. Let's hope and pray that the water is clean.

What's difficult about all of this - is that even if the puncture is negative, the scan is still questionable, and thus the possibility that something is still there. There's also the chance that the puncture is positive, the scan is still questionable, and we have to decide how to treat. What's difficult is it's all still questionable. "We're on the edge of science," his P.A. said to me. There's not a lot on LMD really because it's rare.

I don't know how much more of an anomaly I'm going to be - but I hope against hope that I'm so much of an anomaly that I beat all odds and am one of the extremely lucky ones who - after so many years - is sent home by their doctors because there's nothing left to treat. That they haven't seen any activity in so long that they tell me to stop coming. That's my hope.

So where are we now - what are the options ... what does the path ahead look like. Well - if we get a negative puncture, and because I'm not symptomatic, most likely we'll watch and wait and scan more frequently. If we get a positive test, we need to treat (so says the doctor). To treat it - we can explore proton therapy to the entirety of the spinal fluid. It's difficult, but it's do-able. But it would also put me at risk reaching my lifetime limit of radiation. (Yes - there's a limit.) Alternately, there's the intrathecal catheter in the brain and chemo infusions directly into the spinal fluid on a regular basis. I don't know if he would let me get a positive test and still watch and wait. Why would I want to? Because my ovaries were only removed two weeks before the MRI. I am hopeful that the removal did what it was intended to do - starve out any cells that are still feeding on the measurable amounts of estrogen that was in my body ... and if they starve, they should die. That's the intent. That's the hope. So I am hoping against hope that there's the chance that I could wait and see if the removal was impactful ... IF there's a positive result.

So we sit and wait under IF. We sit and wait under a question mark. We continue on with life - one day at a time ... one moment at a time ... expecting the best ... and surviving on hope.

As I was updating our picture frames throughout the house, I found a piece of paper tucked inside one frame that I used for a wedding photo. It was a frame given to me by a former co-worker when I was first diagnosed in 2010. She wrote the note. It's from one of my favorite poets and very fitting for this time in our lives.

'Hope' is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me. 


~ Emily Dickinson




3 comments:

  1. Dear Melissa, Ron and I pray especially for you on a daily basis. Yesterday we attended mass in your name. I don't know where you are in your religious beliefs but we hope you find some comfort and peace in knowing others care for you and are praying for you. You are a good person with a lovely family. God's blessing on you all.

    ReplyDelete
  2. Melissa.....you write so well....how we feel living with the diagnosis, family life, the little children, uncertainty, the blade..I hope the best results from all you've done today.....I really hope you are fine....

    ReplyDelete
  3. Dear Melissa, your writing is brilliant. You bring your readers into your world. A view and image that is undeniably painful, sad and scary. I wish you, Mike, your boys, and your family didn't have to be there. I will continue to pray for all of you. love and hugs as you watch the boys on their swing. Kathleen

    ReplyDelete